A Twin to Twin Story – The Bogert’s

Charlotte Smarty Pants is participating in the TTTS Race for Hope this weekend at Freedom Park. We have many readers with multiples and others whose families have been impacted by fetal syndromes. We want to take this opportunity to share the Bogert’s story and how their lives have been forever changed. If you have time this weekend please come by our table and better yet participate in the Race.

Ambassador Family Feature Story – Bogert Family

On most snowy days in Charlotte, people’s minds are filled with wonder and awe at how beautiful the city becomes when blanketed with the white fluff we so rarely see in our area. Children grow excited as they learn that school is closed, and parents and adults alike, enjoy spending quality time being kids again. However, on one snowy day in February 2007, Tim and Kim Bogert will forever relate snow to a different experience altogether. When receiving a routine ultrasound in their 35-week twin pregnancy, the Bogerts learned that one twin had no heartbeat. They were rushed for an emergency cesarean section and delivered a lone survivor of Twin-to-Twin Transfusion Syndrome, or TTTS. Now, snow-filled days serve as a glaringly fresh reminder of loss and heartache, of miracles and hope.

Unlike many pregnancies, Tim and Kim Bogert had a rocky start in believing a miscarriage had occurred. However, at 12 weeks into the pregnancy, a routine ultrasound showed they were expecting not one, but two babies. The ultrasound revealed that Xan had velamentous cord placement and had a much smaller share of the placenta that he was sharing with Cole, so the doctors monitored the Bogerts for TTTS, a disease of the placenta that causes disproportionate nutrient and blood flow. From the beginning, the Bogerts were prepared for the possibility of complications and an early delivery by 28 weeks.

“At every follow-up visit and ultrasound, we seemed to be defying the odds with no signs of TTTS and steady and equal growth of both boys, which dumbfounded the specialist, in particular. Because of the cord placement and placental share, he pored over the monitor looking for the smallest hint of trouble, and after every visit he’d say how perplexed he was that everything looked good, and would schedule us for a follow-up visit the next week,” said Tim Bogert.

Despite early warnings of a potentially complicated and short pregnancy, the Bogerts made it to 35 weeks and scheduled their delivery for one week later on February 7, 2007.

“What started out as a snowy day in Charlotte, attending this final scheduled ultrasound at our specialists’ office, turned into both the brightest and darkest day in our lives,” said Bogert. “After getting extensive readings on Xan, the sonographer turned over to Cole and found no heartbeat. After what seemed to be a spotless run at a very high-risk pregnancy, the worst-case scenarios were all playing out. In a blur of panic, disbelief and absolute horror, we were rushed across the Presbyterian Hospital medical complex to an emergency caesarean delivery to save Xan.”

The doctors believe Cole died sometime the day or night before. They explained that he simply fell asleep and died. Essentially, as a result of the TTTS that apparently surfaced at the last minute, Cole gave his nutrients to Xan and helped him grow past where he would have on his own.

After delivery, the medical team had to rush Xan to the Neonatal Intensive Care Unit due to disproportionately high bilirubin count for phototherapy, oxygen and monitoring. The Bogerts barely had time to see him before he was whisked away, but then they were faced with meeting Cole who would always be known as his brother’s hero.

Bogert said, “I turned around, and saw this little angel, swaddled up and wearing a cap like all babies in the hospital wear. He looked so peaceful. I thought it was Xan and said, ‘Oh look how sleepy and peaceful he is’, only to be slapped with the realization that it was Cole. I just lost it. Kim held him and kissed his little face. I saw that his blanket was a bit loose and that his hand was right there, so I reached for it. It was cold. Kim and I both sobbed uncontrollably, and just held him and told him we missed him and that we loved him so much. Then we let him go.”

That day will always be remembered as the one where they were unable to hold their surviving twin, yet got to hold for the first and last time, their twin that died to save his brother’s life.

“It is impossible to separate the experience of losing Cole from the experience of the miracle of Xan surviving. Cole gave his nutrients to Xan, and without Cole there would be no Xan. Our doctors said that if we hadn’t come in for our ultrasound on that snowy Friday, we most certainly would have lost Xan, too,” said Bogert.

In describing their emotions, the Bogerts experienced grief, despair, sorrow, loneliness, bone-crushing sadness, guilt, fear, doubt and pain. But they also experienced relief, joy, happiness, overwhelming love, comfort, gratefulness and peace at the same time. They attribute much of their positive outlook to the staff at Hemby Women’s Center and NICU, who is remembered as being compassionate and sensitive to the family while watching Xan struggle during his first few weeks of life.

“Kim made an analogy that dealing with our loss is walking through water. Some days the water is shallow, and pretty easy to rise above. Some days it’s very deep and we feel like we can keep walking if we’re on tippy-toes and looking up,” said Bogert. “Some days we’re on tippy-toes and the bottom is green and slimy, and it’s easy to go under. But we’ve seen a definite trend from most days being in deep water, to most days being knee or even just ankle deep”.

The Bogerts have since begun to heal and live through their loss by reaching out for support from area groups, as well as those specific to TTTS, such as the TTTS Foundation and the Fetal Hope Foundation. The family visits Cole’s “park” each weekend with fresh flowers and plenty of time; time to reflect, time to heal, time to nurture, and time to focus on the future with a son who will always be a part of his twin.

“As an 18 month old boy, I’m not sure what exactly [Xan] feels, and our job will be to make sure [he] has a positive perspective on things when able. Kim put it very well that Xan is not deficient because he doesn’t have his brother with him. He’s special because his brother will always be part of him. We’ll take each day and challenge as it comes,” said Bogert.

In honor of Cole, the family will participate for a second time in the 3rd annual TTTS Race for Hope in Charlotte held on Saturday, September 20, 2008 at Freedom Park. The Bogerts will be among many families walking in honor and celebration of surviving and lost babies to fetal syndromes like TTTS.

When asked about life today, the Bogerts agree that life is good. After celebrating the birth of Finn in early June, the Bogerts are like any other family adjusting to life in a house with boys that are less than 2 years apart. However, they are different because of Cole and because of a little known disease that changed their lives forever.

“There’s not a day that goes by where we’re not affected by TTTS. As we watch Xan develop and reach milestones, it’s hard not to let our minds ask, ‘what if?’ or imagine what Cole would be like, or what their relationship would be like if he were physically here with us,” said Bogert.

The TTTS Race for Hope gives the Bogerts an outlet to share with others who have experienced TTTS. They agree that the event is a simple way to give Cole’s life meaning beyond family and friends.

Bogert said, “Helping to raise money and awareness is part of our healing and gives us an active and positive outlet in a situation that could quickly spiral into despair. It is also very poignant to us that TTTS doesn’t always end in sad stories. There are many stories of both twins surviving and having normal lives, and that’s certainly the way we’d like all of the stories to turn out.”